Transgender medical intervention: An emerging data field

With the number of transgender treatments and surgeries on the rise, better data and analytics are needed to help medical professionals and insurers accurately assess this new field

When aspects of society change quickly, data and analytics can help professionals in the field respond rapidly and appropriately. At present, an important change in the healthcare sector is the number of people who are undergoing gender confirmation treatment.

A new estimate from the Williams Institute at UCLA School of Law says that in the US alone, 1.4 million people identify themselves as transgender – double that of five years ago1. The report suggests that this rise is due partly to a perceived increase in social acceptance and visibility of transgender people and partly to more robust data collection. Meanwhile, in the UK, the growth in referrals to gender-identity clinics has increased substantially2.

However, data on transgender healthcare is sparse. In many countries, including the US and the UK, recent censuses and other public studies have not asked participants about their gender identity. Among those countries that do, response rates may be low because many people who identify as transgender may choose not to state this on public forms due to fear of discrimination or stigma.

Dr Erica Anderson, professor of clinical psychology at John F Kennedy University, California, and a member of the World Professional Association of Transgender Health, says a number of issues hamper accurate reporting. These include the language used to describe people who are not cisgender (the term applied to people who accept the sex they were assigned at birth).

“Little uniformity exists,” she says. “Few surveys or data bases have captured such information; no reliable historical data exists.” However, she adds that the sources of data that are available “suggest that individuals of all ages who identify as transgender or gender nonconforming are more numerous than previously believed, perhaps as common as one in 200 individuals in the population”.

Why professionals need data on transgender people and their healthcare needs

Healthcare systems rely on robust data and analytics to design and manage health insurance policies that accurately reflect the risks and costs of underlying insurance benefits. New or emerging coverages for which there is a lack of data can present challenges requiring creative solutions.

“An increasing number of health insurance plans are starting to cover gender confirmation surgeries and associated treatments, including Medicaid and Medicare in the US.”

An increasing number of health insurance plans are starting to cover gender confirmation surgeries, including Medicaid and Medicare in the US. In addition, supportive treatments such as speech and voice therapy and hormone therapy are being covered.

Figures from the City and County of San Francisco, the first major US employer to explicitly cover medically necessary treatment for transgender transition in its healthcare plans, show that where historical data is limited, insurers tend to overestimate the cost of coverage.

According to the Human Rights Commission, three years after the plan’s benefit was implemented the city had paid out on only seven cases, as opposed to the expected 105. Meanwhile it had collected $4.3 million in additional premiums to offset projected transition-related claims, but paid out only $156,0003.

New economic study shows cost-effectiveness of treatment

Building a clearer picture

The availability and analysis of accurate data is vital for the proper functioning of the health insurance market. Since the number of transgender and gender nonconforming people who are presenting for healthcare services is rising, insurers need data to understand the topic, says Andrew Naugle, principal and healthcare management consultant at Milliman

Traditionally, the best way for insurers to try to predict the future is to look at past results, relying on historical utilisation and cost data to estimate the same for the future.

In the most simplistic terms, developing financial projections for insurance pricing requires three basic estimates: the number of people who will receive services, the scope of services and the cost of services. In this fast-developing area of transgender medical intervention, the industry struggles to estimate two if not all three of these key data elements. A legacy of under-reporting means that the historical record about the population is incomplete. Furthermore, a lack of benefit coverage for transgender health services has left a significant gap in the billing and claims data on which industry relies for its projections.

Notwithstanding these data challenges, the need to develop credible cost and utilisation projections remains. In time, as numbers increase and more patients are treated through their health insurers, the data will become richer. Until that happens, though, insurers wishing for greater understanding in this area will need the expert help of actuaries, statisticians and health data analysts to help fill in the gaps. Only by doing so will they be able to understand what the future holds.

A new analysis of data relating to transgender health indicates that covering health services related to gender confirmation is affordable and can actually be cost-effective when considering the impact on quality of life.

William Padula is assistant professor of health policy and management at Johns Hopkins Bloomberg School of Public Health. He led a recent study that looked at data from the 2011 National Transgender Discrimination Survey, which includes information on access to medical care and health outcomes, and also from the Healthcare Bluebook, which outlines the cost of medical services. Dr Padula concluded that paying for gender confirmation services is affordable because the price is not significantly higher than the cost of treatment for depression, substance abuse and HIV/AIDS, all of which are highly prevalent in transgender people not in a position to medically transition. Furthermore, the services are cost-effective when considered in the context of added years of quality of life for transgender people.

“Providing healthcare benefits to transgender people makes economic sense,” he said. “This is a small population of people and we can do them a great service without a huge financial impact on society.”4

Better data required in future

Dr Padula’s findings may lead to more affordable and available healthcare for those who are transgender, but more and better data is needed.

“Poor outcomes for transgender people worldwide could be improved by adopting a comprehensive approach ‘informed by high-quality data.’”

A recent academic paper in The Lancet, written by Dr Sari L Reisner, on the ‘Global Health Burden and Needs of the Transgender Population’ found that poor outcomes for transgender people worldwide could be improved by adopting a comprehensive approach “informed by high-quality data”.

At present, Dr Reisner stated, there are issues with the surveys currently available. These tend not to be standardised in either linguistic or geographical terms, which means that transgender health matters remain “understudied”.

“Measuring sex and gender dimensions in health research will contribute to understanding and ameliorating health inequities for all,” the paper found5.

Through analysing data on transgender health and accurately balancing the costs of treatment against those of leaving people untreated, it should be possible to put together cost-effective, valuable insurance cover for the transgender community.

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